Well yesterday after a very rocky start at the lab for bloodwork (after an hour wait for an IV nurse to do the stick and then she didn't get enough blood for tests so we need to go get it retaken next week), We got in to see our regular Pulmo and had some changes made on vent settings! He has now taken Joseph's rate down to 0 on his daytime vent and a rate of 8 on bedtime vent (previously both were set at a rate of 24) and our pressure is now down to 15 (prev 20) and we have a plan to start sprinting 1/2 hour at a time 3 times a day! (maybe Joseph can learn to walk unassisted without the circuits tangeling around his feet) If he tolerates the sprinting after 2 weeks we'll go to 45 mins/ and then an hour at at time!
I also got orders for a PMV and we will start trials for that as soon as I receive it from Apria.
These are the first changes made since we have been on our home vent.(over 2 yrs) so it is a step in the right direction!

kirafaesmom

04-22-2009, 12:28 PM

Wow....that's a lot of change! How exciting to finally be moving towards a little more freedom. I'm praying Joseph does well with the sprinting,

Wow, that's brilliant!! I hope that the vent weaning goes well. How exciting!

Angus is on pressure support of 20, 18 breaths a minute SIMV, PEEP 5, and 1 litre oxygen. Did you have a chat about the LTE with your Pulm?

lynn

04-22-2009, 04:01 PM

Yes I did talk to him- he has no idea what it is (LTE/or VEPTR for that matter just that its a chest surgery) but he is very familiar with the clinic in Columbus- and is willing to do the xrys, lung function tests(the one that was invented by the columbus hosp), ect and have the records sent to them- so I can get it covered by insurance being it is done in Pittsburgh and not out of state.

kirafaesmom

04-22-2009, 04:22 PM

Yes I did talk to him- he has no idea what it is (LTE/or VEPTR for that matter just that its a chest surgery) but he is very familiar with the clinic in Columbus- and is willing to do the xrys, lung function tests(the one that was invented by the columbus hosp), ect and have the records sent to them- so I can get it covered by insurance being it is done in Pittsburgh and not out of state.
Wow...You must be THRILLED! I love it when docs go above and beyond to do what's best for us as families....

My little figther

04-23-2009, 07:08 AM

Lots of changes suddenly but it must be exciting. Good luck with the PMV trial and with all the rest.
Michelle

Ainsley's Mom

04-23-2009, 05:21 PM

Glad to hear about the sprinting! Best of luck with the PMV. Try to get more if you can so you can modify them if you need to. And also because they can get misplaced and it's frustrating to search the whole house looking for it. Getting a PMV is so exciting. Good luck.